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Life-saving heart surgery

A week after he was born, Eitan needed life-saving heart surgery at Great Ormond Street Hospital (GOSH). His mum, Sarah, talks about her experiences.

"Everything had been fine during my pregnancy, but a few hours after Eitan was born, I noticed that he was breathing really quickly. The midwife reassured me that all newborns breathe fast, but when he kept falling asleep and was slow to feed, I wasn’t convinced. We joked that he was just a lazy baby, but then my mother-in-law also noticed that the bottom of his neck was going in when he was breathing.

"They took Eitan to the nursery so I could rest, but by the following morning, they were concerned that he might have an infection and kept us in for monitoring. They couldn’t understand why his IV drips kept collapsing and he was really jaundiced.

"After a week, we were ready to be discharged. We had Eitan’s coat and car seat ready and the paediatrician came to give him a pre-discharge check-up. He listened to Eitan’s chest and shook his head straight away. He could hear a murmur and couldn’t feel his femoral pulses.

"Newborn babies have a hole between the left and right chambers of the heart which usually closes seven to 10 days after birth; that’s why the murmur wasn’t detected sooner. Our paediatrician called a cardiologist and gave Eitan an echocardiogram (ECHO).

Problem with his heart

"We were told straight away that Eitan had coarctation of the aorta (a narrowing of the main artery carrying blood from the heart to the body), a ventricular septal defect (a hole in the wall between the two pumping chambers) and a subaortic ridge (an extra piece of tissue across the opening of the valve between the left pumping chamber and the aorta).

"I remember our doctor showing us a book with diagrams of the normal heart and explaining that Eitan would need life-saving surgery. One minute we were ready to go home to my two other children and family; the next, Eitan was in an incubator, hooked up to machines, and on his way to Great Ormond Street Hospital (GOSH).

Transferral to GOSH

"When we arrived, Eitan was taken straight to the Cardiac Intensive Care Unit (CICU). Professor Elliott came to talk to us and I remember him asking, "What do you do if you have a leaky pipe in your house?" I didn’t understand. "You’d call a plumber?" "That’s what I am," he said, "I’m a plumber, but I plumb hearts.” He was really calm and collected as he explained what they were going to do.

"A nurse took us around CICU to show us what Eitan might look like when he came back from theatre. I don’t know how I managed to stay standing. Never for a million years did I imagine that we’d be in that situation a week after I noticed his breathing was funny.

Multiple operations

"Professor Elliott always said Eitan would need multiple operations to correct his heart. The first was for the coarctation, and was the most critical as it was affecting the blood supply to his other organs. As a newborn, it’s natural to worry how fragile your child is, but Professor Elliott told us to focus on how new his organs were and how he could heal quicker than adults.

"Eitan had a second operation when he was four months old, to repair the hole in his heart, but the hardest operation, as a parent, was his third one. He was two and a half then, and knew exactly what was going on. He didn’t talk from the day we arrived at GOSH until we got home.

"Signing the consent form was a really big deal. It lists everything that might go wrong, and although someone goes through it with you, you don’t really want to think about the "what if". I can’t explain how we felt when we then had to leave Eitan in theatre. We waited for six or eight hours; it seemed like the clock was going backwards.

The long wait

"Nine days after his third operation, Eitan’s heart still hadn’t kicked back in. He was on temporary pacing wires, and flat lined a couple of times when they tried to turn the pacemaker off and see how his heart responded.

"These situations are normal for the doctors, it’s what they do every day but, as a parent, you just pick up the phrases you’ve heard on Casualty. You think you understand, but really you don’t. It’s scary to suddenly find yourself there, like being on a rollercoaster you can’t get off.

"The nurses told us Eitan would probably need a permanent pacemaker. They explained that he’d still be able to live a normal life, but we were devastated. I kept thinking of the small things that he wouldn’t be able to do, like use the trampoline in the garden.

"A couple of hours before he was due to have the pacemaker fitted, from nowhere, his sinus rhythms kicked back in.

"We don’t know if Eitan will ever need more surgery. He still has a few issues, and needs regular check-ups. Knowing it’s something we can’t fix, we’ve had to give complete trust over to GOSH.

Extra support

"One of the worst things about having a child in critical care is that you can’t be with them all the time. You’re encouraged to cuddle your child as much as possible, but having the opportunity to talk to other parents in the same situation would have been a big help.

"I remember watching another family arrive on CICU in the middle of the night. I knew exactly what they were going through and would have loved to have been able to offer them support. I know there are issues of consent, and the outcome of every case is different, but I think just being able to ask another parent, "did you have this?" can make a huge difference. I’ve helped a few friends through similar experiences and have always said I’d be happy to chat to other parents if they want me to.

Pregnancy worries

"We were told what was wrong with Eitan was just one of those things, but I remember still blaming myself at first. I think it’s a natural parent instinct when your child is poorly. I worried that I hadn’t taken enough folic acid or vitamins, and that by continuing to try and feed him, maybe I’d hurt him more.

"When I found out I was pregnant with my fourth child, my daughter, we thought hard about whether to have fetal screening. Part of me wanted to know what might be coming, but equally, I didn’t know if I could handle everything a second time.

"In the end, we decided 'better the devil you know, than the devil you don’t' and opted to have the screening at 16 weeks. Our doctor told us she didn’t have coarctation of aorta, but could have something else. We’d gone from excluding one condition, to potentially finding a much bigger problem.

"It was only at 36 weeks that we knew, thankfully, everything would be fine. That’s a long time to worry. I hadn’t had the screening when I was pregnant with my previous two children – who knows what their scans would have shown?

Looking ahead

"For a while, Eitan really didn’t like his scar. He looked in the mirror every day and asked us to take it away. He was also self-conscious that his sternum sticks out a bit. He’s less bothered now, but occasionally he will moan that it’s sore. Everyday ailments like colds or chest infections always hit him much harder too.

"It’s hard not to treat Eitan differently, and we did have to learn to let go when he started primary school. My other two boys are quite rough and tumble and I was more reluctant to let him play as if he falls over, it’s a much bigger deal. He’s clever though – he knows that if he wants to get his brothers into trouble, he just has to tell us they’ve hit him in the chest!

"You can see there are things he can’t do. He lags slightly behind when running with his friends, and can suddenly get puffed when playing football. But we are extremely lucky and can never say thank you enough to Professor Elliott and GOSH for what they’ve given us."